By Dr John Weru
“There’s nothing more we can do.”
These words are often spoken by clinicians when dealing with patients and families facing progressive, chronic illnesses which are not curable, or diagnosed at a late stage beyond cure. The words leave no room for hope, further communication and shared decision making; they make a transition to home care, a much-feared and often avoided destination. But the reality is that more can always be done. Most importantly, patients know exactly the “more” that they want done for them. The actual challenge is that clinicians do not ask.
At this stage, patients do not ask to be rid of their diseases. Rather, they want to be pain free, to be home with families, to be able to sleep, to walk and bask in their gardens and to go meet peers upcountry. The patient might just wish to have a life closure of an event, a conclusion of a legal process, or even a long wished holiday.
The family might just hope that the patient is fully informed of their diagnosis, prognosis and the progressive nature of the disease. They might also wish to know what symptomatology to expect, what to do in case of an adverse event, or who to contact. There is so much that the clinical team can do to mitigate all the questions, symptoms, fears and worries by patients and families. Palliative care practitioners form the back bone of this assistance for these patients.
These are the issues that patients and families raise over and over again when they are given the opportunity to share. The test for clinicians then is willing to meet the challenge of discovering our patient’s true wishes and help fulfill them. This pushes us outside our own professional comfort zone and takes us more to the human face of the disease and suffering. Modern medicine calls for this collaboration in patient care compared to the traditional paternalistic relationship between doctors on one hand and patients and their families on the other.
A patient we will call Mr T, an advocate of the high court, was diagnosed with late stage cancer of the liver and to comprehend the diagnosis, the prognosis and the late stage of discovery was just too much for him and the family. He was in pain, restless and experienced sleepless nights which could only be controlled using medications. The patient and his family were informed that no interventions however much would heal him and was advised to go home. Mr. T still looked unsettled and was labeled a patient in denial.
When the palliative care team met him, they posed a simple question, if a magic wand would work what would you wish for? It happened that he had always wanted to meet with his friends of young age back at home but because of his busy schedule, he was always unable to make it. Arrangements were made for a meeting in his city home as he wanted to host them in a week’s time, the event was held and now he is living a quality life.
Everybody thought he was in denial, had so much unfinished work in his law firm and feared the progression of his disease. But it turned out to be all wrong; a long held dream of childhood friends meeting is all he wanted to accomplish.
The only time doctors are left with “nothing more we can do” is when we fail to ask.
Dr John Weru is a Consultant- Palliative Medicine Specialist and Leader, Palliative Care Team, Aga Khan University Hospital